England’s National Institute for Health Research (NIHR) has launched a new campaign encouraging patients to ask their doctor about clinical-research opportunities.
Launched just in advance of International Clinical Trials Day on 20 May, the “it’s OK to ask” campaign comes on the back of evidence from new consumer research that public awareness and understanding of clinical research in the UK remains at a low ebb.
As the NIHR pointed out, last year over 595,000 patients took part in clinical studies across England and nationally the trend for research participation is growing year on year.
However, a new consumer poll from the Institute reveals that more than one third of people do not feel well informed about clinical research, while fewer than 20% would feel confident enough to ask their doctor or medical specialist about taking part in a research study.
The new campaign encourages patients who are undergoing treatment for a medical condition to ask their doctor about clinical research, and whether taking part in a research study might be the right step for them as part of their care programme.
It also suggests that patients who do ask their doctor about clinical research should record the fact on the campaign’s Facebook page or telephone-message service, along with any comments on their personal experience or how the NHS could help more patients come forward and ask about research.
“We want patients to know that research is happening in the NHS, have access to information about local opportunities, and feel empowered to speak to their doctors about the possibilities,” commented the NIHR’s Simon Denegri.
“This campaign is about getting that conversation going, and letting patients know that they don't have to wait to be approached by their doctor or nurse.”
A survey commissioned by the NIHR and publicised on International Clinical Trials Day a year ago found only 21% of those polled were aware that carrying out research was a key activity for the National Health Service.
However, 82% of the poll did feel it was important for the NHS to offer opportunities to take part in healthcare research, while fewer than 7% said they would never take part in a clinical-research study.
More recently, a 'mystery shopper' investigation conducted for the NIHR’s Clinical Research Network at 82 hospital sites across 40 NHS Trusts in England revealed that:
• 91% of the sites did not have information on clinical-research opportunities in the obvious places where patients would expect to find it;
• only 34% of the sites had information about clinical research on their websites that was useful to patients;
• 46% of reception desks at the sites visited told the mystery shopper they did not do research, or failed to offer any suggestions on what to do next.
HRA awareness project
Low public awareness of clinical research also came across strongly in an outreach project recently commissioned by the Health Research Authority (HRA).
Conducted by Ipsos MORI along with the HRA, and part-funded by the government-backed Sciencewise programme, the project solicited the views of members of the public and actual patients on various aspects of health research, such as awareness, trust, reasons for participation, consent, information, dissemination of results and streamlining the research-approval process.
Ipsos MORI facilitated dialogue with 60 members of the general public at workshops in four locations during March this year, with each group attending two workshops one week apart. The agency also conducted a survey of 1,116 adults to quantify opinion about health research and the role of the HRA.
In parallel, the HRA conducted its own workshops to canvas the views of patients on the same subjects.
Patients well informed
Not surprisingly, the patients who attended the workshops were particularly well informed about health research. Most had either taken part in a research study or contributed through Patient and Public Involvement in the research process.
Some of the patients had also undertaken training in this area, so their perceptions of health research were broadly accurate, the HRA reported.
While the general public showed a high level of trust in research conducted by the NHS, they were “deeply suspicious” of the pharmaceutical industry, with many believing profits were incompatible with developing products of benefit to patients, the HRA noted.
Nor did the members of the public surveyed generally understand how the pharmaceutical industry and the NHS work together to test out new treatments.All drug trials were thought to be approved and conducted outside the NHS, while the interconnectedness between different organisations was not recognised
In fact, the project suggested the general public has little idea of what health research involves and “only a hazy idea” of what a clinical trial is, the HRA said. Their views were mostly informed by the media, it added.
Unless members of the public had a particular reason for insight (e.g., close relatives with experience of a clinical trial), “their level of understanding was poor and they frequently struggled with the rationale behind the use of placebo and blinding”, the HRA reported.
Members of the public were surprised that adults who are unwell and children take part in clinical trials. They thought these were the preserve of healthy adults.
Trust is essential
Building trust is essential if we are to make the UK a global leader for health research,” commented HRA chief executive Janet Wisely.
“This insight helps us to develop our own plans; by sharing our results with partners and then working with them, we hope that we can change public perceptions over time and increase both support for and participation in health research.”
A full report on the HRA’s outreach project will be available on the Authority’s website (www.hra.nhs.uk) from 1 June 2013. The HRA will also be presenting the findings to the public in London, Manchester and Newcastle on three days in September 2013.
More information on the NIHR’s “it’s OK to ask” campaign can be found on the Facebook page NIHRoktoask or on the campaign website at www.nihroktoask.com.